It’s not you, it’s the dementia

It's The Dementia by Dr. Tam Cummings for CareLiving.org

As a gerontologist, my studies focus primarily on dementias. I educate caregivers, both professional and family, as to why a person with dementia behaves the way they do, or doesn’t act the way they had before. I believe if we understand why a person responds to us in a certain way, that knowledge will help us adapt our behavior and make us better caregivers.

Instead of scowling “Why did he do that?” try putting your thinking cap on and pondering “Why did he do that?”

It is intriguing to me how a memory, a particular type of memory, a personality quirk or decades of life’s ups and downs shaped the person you love. Every memory learned is unique to that individual’s demeanor, intellect, physicality, outlook and spirituality. This mixture of personality, hope, despair, happiness and grief, faith, and millions of daily events meshed together to become the one you know.

And now, strand by strand, these diseases tear apart the memories and in doing so send your loved one ‘back in time’. We must now respond to the reality of this remaining memory strand as our reality also. If they believe it is 1960, then let it be 1960.

No matter what the behavior you’re witnessing, it’s the dementia.

Try to see the behaviors as indicators of the advancement of the particular dementia and not as personal assaults. I promise that your mother has not been waiting for 50 years to repay you for coming home past curfew when you were a teen. See the behavior and put it into the context of the result of a disease of memory. If your loved one becomes insistent about wearing or not wearing a particular shirt or color of shirt, think about the child who refuses to wear any shirt other than the favorite shirt. It’s strands of memory being torn apart, a layer by layer effect that finally leaves only rudimentary function.

It can help to understand what is happening to your loved one if you think of the four dozen or so different forms of dementia as being like infections. Many dementias start in specific areas of the brain, which also helps us identify them. This includes the multiple categories of the Alzheimer’s Dementias, the Lewy Bodies Dementias and the Frontal Temporal Dementias or FTDs.

The type of dementia a person has generally determines how the disease will progress throughout the brain. Knowing the specific dementia your loved one has also tells us in what order to expect an individual’s behaviors and memories to change or disappear completely. Since each of the brain’s four sets of lobes are responsible for specific areas of memory or behaviors, changes in behavior tell you where the disease has advanced to in the brain.

Preparing for the future of dementia care certainly doesn’t mean you will feel better; but perhaps you will be able to plan and prepare for the future without as much angst and heartache.


Dr. Tam Cummings for CareLiving.orgTam Cummings is a gerontologist dedicated to untangling the complexities of dementia and she’s also the founder of The Dementia Association. An internationally recognized author, educator and keynote speaker, Tam has helped thousands of families and professional care partners throughout the United States, England, Canada, Australia and New Zealand understand the stages of dementia and the process of the disease.

Tam’s books, Untangling Alzheimer’s and The Final Year…The Final Moment are designed to allow the first time caregiver and the longtime professional to gain the understanding and skills they will need to work effectively with persons with dementia.

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